INTERNATIONAL FOP ASSOCIATION INC
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Mission Statement
Fund research to find a cure for Fibrodysplasia Ossificans Progressiva while supporting individuals and their families through education, public awareness and advocacy. Our strategy is to fund FOP research through continuous grassroots fundraising. With an extremely small patient community, we lack the means to mount high profile national campaigns, and instead rely primarily on local fundraising and donations from families and friends. We also work closely with international FOP communities to promote awareness and encourage international research efforts. We provide advice and support for patients and their families.
About This Cause
Research is a significant part of the IFOPA’s mission and the key to solving the mystery of FOP. Research efforts can focus on a treatment and cure, including developing medications that alter not just the symptoms of the disease but the disease itself.The FOP Research Laboratory, created in 1992, is located at one of the most prestigious medical and research institutions in the country, the University of Pennsylvania School of Medicine. Led by Frederick Kaplan, M.D., and Eileen Shore, Ph.D., the FOP Research laboratory’s dedicated research team includes three principal investigators with many post-doctoral fellows, scientists, students and staff. This core team collaborates with physicians and scientists worldwide to develop treatments and, someday, a cure for FOP that of finding a treatment and a cure. Since the gene discovery in 2006, we are now closer than ever to reaching this goal. Supporting this program is critical not only to developing treatments for people with FOP, but to also unlocking the mysteries of many common skeletal conditions such as osteoporosis, osteoarthritis, post-amputation treatment, and specific complications of hip replacements, spinal cord injuries, head injuries and some heart valve disorders. The IFOPA works to raise public awareness about FOP. FOP is one of the rarest bone disorders known in the world. Very few people have heard of FOP, let alone know all that it entails -- including medical professionals. Increasing awareness among medical professionals, political officials, and the public at large is critical to serving our population. Increased awareness will result in additional funding for research and member programs, and should drastically reduce the number of devastating misdiagnoses. The IFOPA raises awareness through advocacy, through the dissemination of educational and treatment information on its website, in brochures and on DVDs, and by maximizing every media opportunity available to inform the public and the medical community about FOP. Support, both emotional and functional, is imperative to the health of those living with FOP as well as their families. Overcoming certain obstacles can often be as frustrating for family members as it is for the person affected. The IFOPA develops and drives various programs for our membership including but not limited to educational webinars, a website to educate families and medical professionals, a guidebook for families on how to cope with FOP, a mentoring system for those facing the difficulties of FOP, grants for independent living assistance, an online interactive communication system for members, and regional family and member symposiums and support meetings.